Navigating with the Navigator

Joy*, my breast nurse navigator, has kept me sane (well, as close to it as possible) ever since my 2017 Breast cancer diagnosis.

She was the one who did all three of my biopsies and made that dreaded cancer phone call one Tuesday morning. And, since then, Joy has walked me through the overwhelming gauntlet of tests, appointments, surgery, radiation and “survivorship.”

She did this all while being a girlfriend. I’d like you to know about her heart and her impact in my life.   

First, after my biopsies, I asked her for a copy of my MRI. I wanted a still image of my breasts and I asked if she could rustle one up for me. I knew this request was a little out of the ordinary. Doing biopsy stuff, getting me test results, sure. But this?

“Hi, Joy-

….Is it possible to get a copy of my long boobed MRI scan you showed me on Friday? There is method to my madness- this year's Christmas card.😜...”

 “Hi Sheryle!
You can absolutely get your imaging for future purposes-whatever those may be! I will have a CD made... The Christmas card idea truly made me laugh out loud. What better way to spread Christmas cheer than a glossy breast MRI photo? Ha!…”

But we’re not done yet.

 “Hi Sheryle,

…The lady who works in the CD and medical records assured me that images can be printed from the CD’s, but the file size of an MRI is extremely large (read: might crash the average computer). So, I went ahead and did a screen-shot of what I consider the ‘money shot’...” 
The money shot!

Yes, Joy was going to great lengths for me.

So, I wondered, how did that all start?

She began, in high school, as a home health aide for disabled children. Her official nursing career later started in pediatrics, at a children’s hospital. But, because of the taxing reality of its heart-wrenching pediatric patients, she applied for the navigator position she has now and voilà! 

So, what is a breast nurse navigator, anyway? We can posit, it’s the ultimate connector and guide through one’s diagnosed paces.

 “… The nation's first patient navigation program was initiated by Harold Freeman in 1990 at a public hospital in Harlem, New York… The philosophy of patient navigation encourages a system of health care delivery, which supports timely movement of the individual patient through an often complex and fragmented health care system...”

“The Origin, Evolution, and Principles of Patient Navigation” By Harold P. Freeman; http://cebp.aacrjournals.org/content/21/10/1614

Used with permission.

Joy is, indeed, passionate about her work. Her enthusiasm for it is infectious.

She told me how she loved being there for women at this most scary time. She makes it a point to study each patient during the biopsy, gathering as much intel about her support structure and life circumstances as possible.

That, in fact, taps into the downside of her job, mainly, her frustration of not being able to meet the overwhelming demand of all cancer-related issues. Joy often feels spread thin. Diagnosed women move along to another facet of their treatment plans, like chemotherapy or radiation, and there, indeed, is no breast nurse navigator in place to support them there.

So, she usually gets a phone call from a distressed woman, asking for help. She has to not only do her job, centering on diagnosis and biopsies, but also tend to all other areas of cancer as well.

It’s too much. And we can’t clone her.

Therefore, logically, one would think this reality would be a gigantic impetus for the medical community to instate navigators in all clinic/ Cancer Care areas. Well, unfortunately, not quite.

Frequently, it comes down to the bottom line.

Clinics will assert, however legitimately, they simply don’t have the funds for that scope of care. Or, another possibility? Sometimes, clinics are clueless this is even a problem. They simply don’t hear about the in-need patients, asking for and requiring specific support. They, perhaps, don’t see a problem because nurse navigators, like Joy, are in clinics running around like chickens with their heads cut off, trying to be all cancer things to all cancer patients, getting the various needs met.

And then there’s the reluctance to do a more ambitious sweep of all interconnected clinics. One theory, in dealing with powerful people making these decisions, states that if navigators are fully implemented in one individual clinic, they’d then need to be implemented in all clinics. It’s a matter of standardization. And, what’s more, the argument declares standardization can kill innovation. Therefore, a hesitant response may occur.

Another possibility? Navigator installation may be deemed unnecessary, especially since there are already roles such as radiation nurses and social workers commonly in place in clinics.

Maybe the powers- that- be see it as redundancy.

Perhaps, it’s simply too intimidating a prospect, as this nurse navigator would not only need expertise in all things cancer, but also in coordination, networking and scheduling responsibilities.

In essence, the navigator acts as an omnipotent cancer concierge. Would this, then, be too much to ask of one individual?

Or, could there, indeed, be an emphasis on training, incorporating the “many hands make light work” theory, while working as a cohesive Cancer Care relay race?

Part of Joy’s vision includes a regular meeting of all navigators, sharing information and updates. Whether that’s on a weekly or a daily basis, it still calls attention to the interconnection of everyone, cross pollinating and meeting the needs of the patients in their care.

She has presented her wider installation proposal to her own clinic. She sees potential. She desires this navigator role to be installed, at every phase of treatment, for ALL cancers, not just Breast cancer.

Joy envisions the navigator acting as a hands-on advocate, for each diagnosed person, even going so far as to accompany the patient in her appointments. The ultimate support person. The importance of that cannot be overstated.

For there are too many women, unfortunately, who have no such person in the room with them. Navigators, therefore, would guarantee the patient would not be left alone, to face her intimidating reality. They would do the emotional handholding, as well as the practical matters of taking notes, deciphering the daunting cancer language and coordinating the next appointment, test or procedure.

Again, the powers- that- be might prefer to see the evidence- based practice; they want concrete results.

But, throughout the country, navigators are in place. It IS happening already.

It is why Dr. Harold Freeman was inspired in the first place. In his work, he saw a direct correlation between navigation and increased survivorship.

“After the implementation of patient navigation for breast cancer, the number of women seeking treatment for late stage (stage 3-4) breast cancers decreased from 49% to 21%.”

“Cancer of the Breast in Poor Black Women,” By Harold P. Freeman and Tarik J. Wasfie, 1989; https://www.ncbi.nlm.nih.gov/pubmed/2720605?dopt=Abstract

Harold P. Freeman Patient Navigation Institute; http://www.hpfreemanpni.org/resources/

Used with permission.

As it stands now, Joy is currently awaiting a response from those powers- that- be.

And, in the meantime, she’s still the only breast nurse navigator I’ve encountered, thus far. But her dream of an official navigator, stationed at every port? It’s not happening yet.

So, she works to the best of her ability, trying to meet patient needs.

As I endeavor to maintain my survivorship, Joy and I still keep in touch, dealing with everything that Breast cancer entails. We’re friends, but with that being said, she is still every bit the professional nurse navigator. She executes both beautifully.

So, beyond the clinical, the real value I’ve experienced of nurse navigators, through Joy, is the human, compassionate component. She has been there through the terrifying. She not only scheduled appointments, but she also listened to my fears and concerns. That element of care was more important to me than any cancer test. I needed the “friend” results much more than anything from a lab. Seriously.

Therefore, if/when, you are given an unfortunate diagnosis, I hope you stumble upon a nurse navigator like Joy in the process.

It will make all the difference.

*(Name changed for privacy).

Copyright © 2019 by Sheryle Cruse